Evening Update

Mommy took Rebekah to the oncology clinic today so that they could look at her g-tube site and infection once again, since it was getting worse. They had spoken with the surgeon's office (who had put in the g-tube) and they wanted oncology to look at the sight and also to check the volume of fluid in the g-tube balloon. The volume was good and oncology couldn't tell anything specific from looking at it. So, someone from the surgeon's office came down to look at it. As she looked at it, it didn't look "roaring" so she wasn't ready to switch the antibiotic, at least not yet. The change could be from a reaction to the topical cream that we were applying, so we stopped that. If it gets worse, we need to call the surgeon's office. If it hasn't improved by next week, we should schedule an appointment at the surgeon's office. She has not been running a fever, so I haven't been overly worried about it, but I don't want it to get out of hand. So now we have three doctors to call depending on the circumstance - pediatrician, oncology or surgeon.

We took Sarah with us and let me tell you how much fun it is to be driving down the freeway and have her throwing up in the back seat with nothing I could do for her. Once we got to oncology, I made sure to mention that Sarah was sick and probably contagious, so they took us into a special room that vents to the outdoors (instead of back into the hospital air system). We took some of our own toys so that the girls wouldn't infect a bunch of clinic toys. I really didn't want to cause any harm to any kids whose immune system might be "nothing". Gage was probably still in the hospital, but I didn't want to get anywhere near him since his counts are low. Would have loved to visit with him and his mom, but definitely didn't want to give them what any of us have.

Sarah has continued to throw up most of the day - the last time was around 4 pm. She has wanted to eat, but anytime she eats it all comes right back up, so I haven't let her eat much. The pediatrician's advice nurse said to give her only clear liquids for the first 24 hours and start with very small amounts and if she throws up let her stomach rest for at least a half hour before giving her anything else. She's not been a happy camper. I was able to give her a little benadryl and tylenol and it has stayed down, so hopefully that will help her. I sure hope that tomorrow is better and she can eat a little and keep it down. The pediatrician's office said to expect it to last 3 or 4 days and she might be better one day and relapse again the next day. Ugh!

Rebekah continues to complain about her tummy hurting and pointing to her g-tube. She doesn't want it looked at or touched, but she did want owie medicine on it tonight (so I put a little vaseline on it, which the surgeon's office had said would be ok). She has definitely been out of sorts.

It has been a rough day, but it could be worse. We are home (and not in the hospital) and I have been able to care for them without too much problem. Daddy has been able to work. It hasn't been easy, but we have survived the day. Tomorrow is another day. One day at a time, one hour at a time, one minute at a time... That is all we can do.